A Happy Book for Crappy Days

Some moments in life are horrible, discouraging, draining. Some days (or seasons) are full of them. They leave you wondering about your life and doubting yourself. Some leave you reeling in pain, overwhelmed by a flood of emotions too deep for words. Some days, you need to remember that not all days are like that. Some days are amazing. So amazing you never want them to end. Full of uncontrollable laughter, beautiful memories you never want to forget, moments you wish could never end.

And that's why I made My Happy Book of Happy Things for Crappy Days. Long name, I know. So I refer to it as My Happy Book. It's a sort of scrapbook-in-progress where I stuff wonderful little things: meaningful cards and notes from people, inspiring quotations, and tiny trinkets from special moments in my life. It reminds me of what I have accomplished and what I can accomplish. It reminds me that there are people in my life that love me. It reminds me that no matter how hard a season is, life is still good.

In many ways, I am presently in a period of waiting. I have experienced frustration, discouragement, self-doubt, pain, and I have told my husband "I quit" more times than I can count. (I never really quit, though. Something about saying it helps satisfy my frustration for a brief moment and then I go right back to not quitting.) But several weeks ago, as I was looking through some old emails to try to find a document, I stumbled on a beautiful email someone special wrote to me before I moved back to the States after living in the Philippines for a couple years. She wrote about so many beautiful memories and told me how my life and work there made an impact. She wrote about her prayers for my future. It has been almost five years since that email was written. And as I read it in my house in America, I cried so many tears. Tears of remembering so many good things. Of remembering who I was who I am. Of remembering where I am headed. Of remembering that this season will pass and another season of adventure awaits. I think I'm going to print this email and put it in My Happy Book. I'm sure another day will come when I will need to read it again.

If you are having a "crappy day" and need some encouragement, maybe this will help: A Word (not mine) Of Encouragement.

Exhausted Body, Happy Heart: Traveling with Lupus

I went on an amazing week-long vacation to DC earlier this month. My mind is still on a high from wandering all over my favorite city. I love being on vacation. I love going to museums, hiking in new places, and exploring through quirky shops. My body, however, does not. When I go on vacation, my body thinks I'm being tortured as it has to work harder to try to keep up with all of my adventures. At the end of each day (and the next morning...), my body is screaming with arthritis and fatigue (and a little bit of nausea). And halfway through my vacation in DC, I was already exhausted.

It's not an option to have a vacation from lupus, but it is very possible to have a great vacation with lupus. Here are some ways to keep lupus from spoiling your summertime vacation:

1) Rest before you go. This takes a lot of careful planning and forethought. If you wear yourself out tying up loose ends at work and running a dozen errands to get ready to go on vacation, you won't have much left when you actually get there.

2) Take breaks. Many of them! Sit every chance you get. Benches at parks and museums. Coffee shops. Anywhere! And while you're sitting there, take advantage of the opportunity to soak in your surroundings.

3) Drink a lot of water. Staying hydrated is a great way to give you energy and help keep your body from breaking down.

4) Wear sweat-wicking, sun-protective clothing and stay in the shade every chance you get. This will keep you cool and give you extra protection if you are photosensitive.

5) If you're with someone, let them help you. Most of the time, I don't ask for help because I don't want to be a burden. But I've come to realize that my husband (my partner in world exploration) would much rather help me than see me struggle. While we were in DC, he did a lot of little things like opening water bottles for me and holding my hand (pulling me along) when we were walking uphill. It's also important to make sure you communicate when you are getting tired or need something. They can't help you if they don't know.

6) Don't forget to take your meds! If I miss just one dose of my meds, I get fatigued and nauseated very fast and it takes me days to recover. Being in a new place can throw off your routine, but make sure you don't forget the basics. (Set an alarm on your phone if you have to.)

7) Eat nutritious foods and stay away from trigger foods. Everybody wants to eat exciting food when they're on vacation. But make sure to be smart about it. Nitpicking about every ingredient might not be an option, but you can choose to avoid/minimize the "bad" stuff and eat things that help make you feel better.

8) When you have the choice, always pick the easier option. Elevator or stairs? Elevator! Walk or ride the Metro? Metro! Do anything you can to conserve your strength so you can use it when it really counts.

9) When your body is wearing down, don't force yourself to keep going. If you need to go back to your hotel and call it a night earlier than you were planning, do it. Resting so you have energy for the next day is always a better option than having to spend an entire day in bed.

10) Don't get emotional about any adjustments you have to make because of lupus. It is what it is. You don't have to let guilt, shame, or self-pity be a part of your vacation. Be thankful for this amazing opportunity you have.

11) Give your body time to recover when you get back. Don't expect your body to be able to dive full force into work, household chores, daily routines the moment you return home. Your body (and mind) may be a bit slower and require a little time to get readjusted.

Do whatever you need to do to stay healthy and  to keep your body from shutting down. And don't forget to enjoy every good moment! Life with lupus is definitely hard. But, having lupus does not mean you can't live to the fullest. You can still have a full life. Life with lupus just means you have to live in a different way.

A Moment in a Museum

I'm in Washington, DC for the week and I am so ridiculously happy. I love this place. My husband and I lived here for a couple years early in our marriage and we love to dream about coming back. So anytime we get a chance to visit, we are are like two kids in Disneyworld. Disneyworld, except with museums instead of rides and monuments instead of people dressed up as Disney characters.

I spent today exhausting myself at the National Portrait Gallery. Every time I visit, they have new temporary exhibits, so every time I come back it's a new experience. Today, I was captivated by one temporary exhibit featuring the photography of Yousuf Karsh. (I thought of trying to write a fancy description of Karsh and his work, but then felt completely inadequate. So if you're truly interested...Google it.) One particular photograph mesmerized me: an image of Aaron Copland. Copland was an important American composer who fascinated me from an early age. I remember hearing one of his pieces, Cat and Mouse, at a piano competition and then begging my piano teacher to let me play it. I remember being moved as I heard my professor give a lecture on his life while I was in grad school. And then, here I was with this photograph in front of me. Copland seated at a grand piano with one of his manuscripts and his eyes staring at piercing the camera.

I felt like he was looking directly at me. It was as though this photograph was a bridge between times and I was given the opportunity to spend a moment with Copland himself. Standing in front of his picture, I was transfixed. I didn't want to leave that spot. I fell in love with that portrait. I wanted to take a picture of it on my phone, but signs clearly indicated that no photos are allowed for this exhibit (and they had plenty of guards around to make sure no rules would be broken). So I stood there, staring. I soon became very aware of the crowds of people around me, squeezing in to see this picture of a man they probably knew nothing about. My hypersensitivity won out and I sadly walked away.

The gift shop was just steps away, so I went in with hopes of finding a postcard with an image of my new favorite piece of art. Nothing. I so wanted to be able to look at that picture again and again, whenever and wherever I want. But some things are meant for just a moment.

I returned to that spot three times, trying desperately to ingrain the image into my mind. But even now, mere hours later, I find that beautiful image slipping away. And I will probably never be able to see it again. And even if I do, I will never be able to relive the experience of seeing that work for the first time. That moment is gone forever. 

I have many moments I wish could never end. These are the special moments that make me want to keep living. They are beautiful, precious, inspiring. And they get overshadowed by a myriad of moments that are hard, painful, or mundane.

I am a pianist. It's not a hobby. It's my profession passion. I love my work art. I also have lupus. There are days when it is physically impossible to practice. There are other days when I come home from a day of rehearsing in tears from the pain and exhaustion. I go into every performance with the knowledge that it could be my last. This is a hard way to live. But I love it. I love it because I love all the moments. I don't let them slip away unnoticed. I let them mean something. I live them - truly live them. All of them.

Help Me Decide!

I'm an on-the-go-and-always-busy kind of person. And I absolutely need my morning tea to make it through the day. (I used to be a coffee person until coffee started to hate me.) So in the mornings, while I'm mad rushing to get ready for a full day of work, I'm also boiling water for tea. Then before I head out the door, I quickly pour the water into my KeepCup with a bag of loose-leaf earl grey tea, and off I go. (If you haven't heard of KeepCup, you can check it out here.) I don't like using disposable cups because I start to feel guilty about being so wasteful and not being green, so I'm a big fan of the KeepCup. The problem is, between working multiple jobs and dealing with lupus, dishes don't get done every night, or every other night...They pretty much get done when they get done. And with an increased work load waiting for me in the fall, it's time to start thinking about getting another KeepCup. 

I decided that I want my next KeepCup to sport some purple for lupus awareness. This is a big deal since I hate the color purple so passionately. But my passion for lupus awareness wins out. I designed a couple of options for my next KeepCup, but I just can't decide! So I decided I would leave the choice to my readers. What do you think?

Option A screams purple.

Option B is more subtle.

Lupus, Scriabin, & Overcoming Limitations

As I type this, I have two Hello Kitty band-aids on my right thumb to cover two tiny holes where my doctor injected me with cortisone. My left hand is in a splint to keep my left thumb from getting as severely damaged as my right thumb had gotten. After my right thumb stops aching in a few days, I will have the joy of wearing splints on both hands. Look out, world! I'm going to look awesome! Cortisone injections in my hands have become a normal thing for me. You would think I would get used to them, but I don't. My doctor has become quite accustomed to the little, atonal songs I sing to distract myself while he sticks needles into me. Yesterday, I asked my doctor if there was anything we could do to keep me from having to get these injections so often. He responded, "Well, you're my only patient who's a pianist, so..." I have two choices: I can stop playing the piano and reduce my number of cortisone injections each year, or I can keep playing the piano and continue needing the injections. Both options are painful. I would rather pick the option that lets me have a life.

...

Nocturne in D-flat major (from 2 Pieces for the Left Hand, Op. 9), by Alexander Scriabin

There is something about this piece that is all about overcoming limitations. If you listen to it, you probably wouldn't realize how different it is from any other piece. But when you see it performed live, it is an amazing experience. The pianist's right hand (the hand that is closer to the audience) doesn't touch the keys even once. It is a piece for the left hand...solely the left hand. When I first saw it performed, I sat there thinking, "I can't believe all these sounds are coming from one hand." The fact that this piece has such a great limitation doesn't make it any less brilliant or virtuosic.  In fact, it's limitation makes it all the more so.

Horrible pain in my right hand drove me to start working on this piece. As I have delved deeper into its intricacies, I have fallen in love with it. It's not just a piece I can play when I am in pain. It's a reflection of my life: The process to learn this piece is stretching, difficult, slower, and takes a lot more thought. I can't practice it for many hours a day (as I do for other pieces) because I don't want to push my arthritic left hand beyond it's limit. Did I mention that I'm right-handed? I'm not just limiting myself to one hand. I'm limiting myself to my hand that is more limited! It's the kind of piece you take day by day. Whatever my hand can handle doing that day, that's what I do. No more. No less. The result is beautiful, eye-opening, inspiring. For me, it elegantly laughs in the face of the word impossible.

I have limitations. They are very real. They make my life very difficult for me and my husband (who spends more time than his share taking care of me). I have to do many things most things in my life differently from everyone else. My hands are small for a pianist. And then when you top that with systemic lupus (which carries with it things like arthritis, tendonitis, and carpal tunnel syndrome), playing the piano becomes impossible harder nearly impossible. But when people look at my life, I hope my limitations are not what they see. I hope they don't think, "Eh. Not bad for someone with limitations." I hope they see something beautiful. A masterpiece. And if they realize what kind of limitations I face, I hope they think, "Impossible! I can't believe someone with those kinds of limitations can do all of that! How does she do it?"

I hope they ask. And I hope people never stop asking me...because I love the answer so much. But I'll leave that for another day.

For now, I have some aching hands to take care of.